POSTED BY PAMELA FAYERMAN
Across Canada, many thousands of long term care facility residents have had the most lonely, unimaginably horrific deaths from COVID-19.
Years ago, at the end of their long lives, both of my parents died in care facilities. But they had, what I would consider, relatively good deaths; their suffering wasn’t prolonged, they were surrounded by their children and they had palliative care to minimize pain.
The tragedies we’ve heard about in the long term care system during the current pandemic has highlighted the many changes needed to improve staff working conditions, bolster staffing levels and salaries, reimagine facility designs, and raise the overall quality of care.
We also need to re-imagine how to improve the end of life experience, whether it’s in a facility or at home. Palliative care is one approach but end of life doulas are another. Douglas College offers a certificate program; it started today.
Jennifer Timer is a B.C. end of life doula. She was formerly a registered nurse whom I had met several years ago after her 70-year old mother, Rosemarie, died from a fall in a B.C. hospital. Ironically, Timer was a falls prevention educator so it is perhaps not surprising she developed post-traumatic stress disorder stemming from her mother’s death. You can read my 2016 story in the Vancouver Sun about this here.
Timer’s experience led her down a different career path. Now that she is an end of life doula, I am sure she will excel in her new calling, informed as it is by her personal, nightmarish experiences related to her mother’s tragic journey. Timer says her goal is to offer families some peace of mind, comfort, and grief coping skills as they navigate stages from advanced care planning to end of life.
On occasion, I ask others to craft personal essays and articles for this website. Read Jennifer’s below:
By JENNIFER TIMER
My Mom did not have a good death.
Her body was riddled with bone cancer that had spread from her breast. She was supposed to live out her final days peacefully in a hospice. But the negligence of a healthcare worker took that peace away from us when their inattentiveness led to a fall in which Mom suffered a subdural hematoma.
She slipped into a pain-filled coma within a few days and died in a hospital bed eight days later.
I stayed with her as much for myself as for her. Because, as a nurse, I knew she could still hear me, I made a playlist of her favourite songs and played them over and over again during those days. I talked to her all the time. I roomed in on a cot that staff brought me, but I also climbed into bed with her when she wasn’t too visibly uncomfortable, grimacing or moaning.
I hugged her gently. I held her hand, I kissed her and loved her.
Mom’s death was so hard on me that, after a long period of deliberation, I left the nursing profession. I took a break from providing care as a professional for a few years, but eventually found a new calling: Helping people to experience a better death than that which my Mom endured.
These days, I am an end of life doula and counselor. If you’re not familiar with the role of an end of life doula, we generally work between the medical and funeral worlds, doing as much as we can to help individuals and their families experience an end of life journey that best reflects their values, wishes, and beliefs. Advance care planning is a large part of our work, informing individuals and their families about their choices surrounding advance directives (aka, living wills) and helping them document these and end of life journey wishes that cover everything from where they optimally would live out their final days to what music they’ll listen to and what special items they would want to have with them from their homes, if possible.
Another significant task we fulfill is legacy work, to help individuals with life-limiting illnesses create mementos for family and friends.
What I certainly could not have expected before joining this profession was the oncoming global pandemic that is COVID-19 and how devastating its impact would be on end of life care and death. As we have seen over the last several months, our most vulnerable seniors in hospitals and care homes have been severely affected and statistically represent a significant percentage of our national death toll from the coronavirus. Caregivers are overworked; care homes are struggling despite already being underfunded and understaffed. Outbreaks have been ravaging seniors’ homes.
Understandably, drastic restrictions have been put in place regarding visitation and volunteerism, leaving seniors who might already be socially suffering even more isolated, which we know further exacerbates their physical and mental comorbidities. Worse still, families worldwide have lost loved ones without being able to say goodbye, due to visitation rules. Even individuals who do not have COVID-19 are separated from their families, who often function as their healthcare representatives, and maybe tragically alone at their time of death.
The role of the end of life doula has not yet been accepted and recognized into the Ministry of Health’s formal healthcare team. As such, whereas we would be honoured to sit vigil with dying family members to provide some family respite or when their loved ones cannot be present, we are barred from entering the hospital or care home even at the request of a family member. We cannot sit as a peaceful comforting presence, read stories, show photos, call distant relatives to put to our client’s ear, be a shoulder for family members to cry on.
Being so limited by COVID-19 restrictions is frustrating, albeit understandable. People are dying alone, in suboptimal conditions, yet this is exactly the opposite that we are trained to provide. Thankfully, Zoom and other virtual capabilities have provided some connection and comfort to families during this bizarre time, allowing last words of love and gratitude to be shared, should a nurse or a care aide find the time to facilitate this communication. But people are missing out on vital moments that will serve to only prolong their grief and suffering.
Unique goodbye rituals and ceremonies are family-specific like taking a lock of your loved one’s hair. All the little things that matter at the end of life are being upended, passed over, forgotten, or disregarded due to COVID-19. Now more than ever, an advance care plan, composed of advance directives and expressed wishes for the end of life, is vital to try to help you have your wishes at least somewhat respected if at all possible.
Jennifer Timer, MSN